4-Issue Subscription Extension
When we spotted Jane Gross' enthusiastic review of I Wasn't Strong Like This When I Started Out: True Stories of Becoming a Nurse in the New York Times, we were ecstatic. After all, it's not every day that a collection of essays published by a small literary press based in Pittsburgh gets reviewed in the Times. But what was more gratifying, was that within hours of the review's publication online, the article, and as a result the book, have taken on a life of their own.
The review became the Times' 3rd most emailed story, and the book reached #18 on Amazon.
What does it all mean? Considering that there are 2.7 million RNs working in the US today, we think the response has a lot to do with how under-represented nurses are in publishing and literature. These 21 personal narratives shine a light on the world of nursing, and reveal nurses at all stages of their careers--passionate, terrified, sometimes simply exhausted--as they take on one of the most challenging and under-appreciated jobs in the world.
Want a sneak peek? Read Lee Gutkind's introduction, a tribute to "the indispensible and anchoring element in our healthcare system."
The Anonymous, Irreplaceable Nurse
I have written five books about the medical world over the past two decades, and for each book, I have plunged myself into the medical center milieu, living the life about which I was writing—psychiatry, pediatrics, surgery, genetics—from varied points of view. And yet, as I sat down to write this introduction, it was difficult to remember many of the nurses in those stories. Doctors and patients—yes. But the nurses are somehow and for some reason not nearly as clear in my memory.
And another thing—over the past few months, I have been back in the hospital for personal reasons: my mother, ninety-three, was admitted because of suspected heart problems; my son, twenty-one, experienced severe intestinal problems and was admitted; my uncle, eighty-six, and one of my oldest friends, Frank, seventy-two, were dying. Sitting and visiting with these four people who had been in my life for nearly as long as I could remember, I saw very few doctors, but I remember quite vividly who they were and what we talked about. Doctors are deity. They’re the guys who count—so we have been led to believe.
Yet they could not function in most venues without nurses. And where in my recollections are the helpful and caring nurses who were constantly in and out of the rooms, changing bandages, arranging schedules for testing, giving and explaining medications, calming the anxieties of patient and family? I cannot tell you what any of these nurses looked like, what their names were, where they came from. All I remember, and all that mattered, is that my loved ones were tended to by these irreplaceable yet (at least to me) semi-invisible people. I felt comforted and secure because they were there, yet took them for granted.
That these professionals are so unnoticed is a significant aspect of nursing that both intrigues and troubles me. There are over 2.7 million working registered nurses (RNs) in the United States—not to mention our many licensed practical nurses (LPNs) and licensed vocational nurses (LVNs)—compared with about 690,000 physicians and surgeons. There are more nurses in the United States than engineers (over 2 million) or accountants and auditors (1.2 million). Think of it: More than half of 1 percent of the entire US population are nurses—and the number of nurses is expected to grow over the next half-dozen years to nearly 3.5 million, due in part to the more than 75 million baby boomers who increasingly require residential, home, hospital, or hospice care. Why do we take their work for granted? Surely everyone should realize that nurses are the indispensible and anchoring element in our health care system.
Of course, we all know nurses; I mean, we know them as people. They work out at the gyms we go to, live in the apartment across the hall or in the house around the corner, hang out at the local Starbucks, take courses at the nearby universities where they work on advanced degrees; they are everywhere, men and women of all ages, from twenty-one-year-old graduates to middle-aged folks returning to the work force or starting new professions because of our ailing economy. Nurses are ubiquitous in society. We know that they help us, and we know that they are often the key forces who keep our loved ones (and us!) alive. And yet, we know very little about them—professionally.
There are many reasons for this lack of awareness, foremost of which might be the fact that nurses no longer wear distinctive uniforms, so we don’t readily notice or remember them. No more white hats with the red crosses or white nursing oxfords. Running shoes, clogs, and blue scrubs, sometimes with lab coats, pretty much constitute the wardrobe of all medical personnel in the hospital, nurses included. And the larger the medical center, the more categorized and confined the nurses become. While doctors, administrators, social workers, genetic counselors, and others float through the hospital, nurses remain more or less in their assigned, self-contained units. And because the workload is often overwhelming, they rarely leave the floor—or the operating room. Scrub nurses remain in the OR throughout their entire shifts, wearing masks. At one point in time, hospital cafeterias were maintained to serve the medical staff, but now they mostly service the families of patients. Most nurses in medical center settings have little time to sit down and eat meals like “normal” people.
There are also nurses in street clothes—home care nurses, mostly, who tend to the chronically ill or the dying. Nurses often specialize, these days. There are transport nurses assigned to ambulances or helicopters, for example, and transplant or procurement coordinator nurses, not to mention nurse practitioners who fulfill roles once played by physicians. In this collection of essays, you will become intimately involved with many different kinds of nurses from diverse walks of life, nurses of various ages and differing attitudes about their profession. Most of these essays were submitted in response to a call for manuscripts over a period of a few months. We received about two hundred, and most of them were quite excellent. Few nurses receive training in creative writing, and yet the power of the narratives and the clarity of the prose were quite astounding. Perhaps it is because nurses have such compelling stories to tell—and also because the stories they are telling have brewed inside of them for many years (in some cases, decades)—that the stories burst forth with vividness and passion.
But allow me to revisit the idea of and the reasons for nurses' anonymity in some quarters. Nurses tend to keep their experiences to themselves, though they do trust, confide in, and confess to other nurses. I am not saying that there’s no friction or animosity between nurses in the workplace. To the contrary, nurses are more critical of one another than are members of any other group in the medical center, including physicians. Nurses have a lot to prove to themselves and others precisely because their work is often not spotlighted. But as hard as they can be on one another, nurses faithfully and forcefully support each other in times of stress, emotion, and need—most especially the veteran nurses who reach out on a regular basis to those who are just entering the profession. This mentoring aspect fades as the nurses mature and fashion their own distinct ways of dealing with difficulty, but there seems to be an affinity and connection between the veterans and the rookies—the head nurses and the newbies.
A head nurse must be the strongest person in the unit, for he or she serves as a role model; at the same time, this person must exhibit tenderness and be attentive to younger nurses, usually recent graduates, especially those who are experiencing a patient’s death for the first time. Losing a patient is an initiation, a passage through which all nurses who work in tense and highly demanding environments must travel—a sad and unavoidable voyage that remains forever in the nurse’s consciousness.
I observed this passage quite vividly, once, learning from the points of view of both the veteran and the new nurse at a children’s hospital I was writing about. A head nurse in the neonatal intensive care unit (NICU) told me this story: a baby died while a brand-new nurse, fresh out of school, twenty-one years old, was caring for him. “I went to be with her right away, even before the baby was dead but when it was clear that death was imminent,” the head nurse told me. “I knew that the baby was taken care of. We had other nurses covering that baby at that time, and the social worker was with the mom and dad. So I went to be with that young nurse, who probably needed me more than anybody else did. I asked her, ‘Do you want to continue taking care of this baby, or would you like to change assignments?’
“And she didn’t say anything, and then I said, ‘I really think it would be better for you if you took care of this baby.’ She needed to know in the days to come she could go through this whole process. And she did. She was in tears, but she returned to the bedside and picked up the baby and held him. And after the baby died, she picked him up again and held him close to her. She held the baby because Mom and Dad could not hold the baby. Mom wanted to remember the baby the way he was when he was not sick. So she helped the family by doing that. But she also helped herself, because she was able to go through the whole process with this little baby and family. And after the baby died, she carried him downstairs to the morgue, where he was going to have his autopsy.
“She went through all of the sequences. And I think that the right decision was made for her to continue with that baby, but for her also to take note—to know that she had someone to talk to. Because you need to know that you are not going through this alone. That’s too hard. You see, this has happened to me. I have been that nurse taking care of the baby, and the baby has died, and I learned that the best thing was to do all you could for the baby and for the family, extend yourself to the maximum—because in the end you have to live with yourself.”
Weeks later, I met the nurse whose story the head nurse had told. “It was the first time I had ever dealt with anybody professionally or personally who was dying,” she told me. “But that day they assigned me to take care of Adam. About two hours after I started, they did his EEG (electroencephalogram), and everything was flat and nonreactive, and the parents decided that they were going to withdraw support. Right then and there, I just got a knot in my stomach because I knew that this was my first time. Don’t cry, don’t do anything—it was like I was really trying to talk myself into holding back from feeling anything. And then the parents didn’t want to hold him, and as bad as I felt and as teary-eyed as I was, I decided I wanted to hold him; somebody had to hold him. I just felt it was unfair to allow him to die alone.
“Since then, I have gone through this experience two or three more times. And it gets easier—not so much easier emotionally, but you are in better control of it. You might cry only one or two tears instead of bawling your eyes out. It is not as gut wrenching as it is the first time. It never feels better—it is just easier to hold back until you are driving home by yourself and nobody can see you crying.”
As I thought back to that conversation with the young nurse, I realized that the nurses in this collection are telling very similar stories. They are stories about nursing, of course, but also stories about aloneness and strength. These essays are survivor stories, narratives about how to get through the trauma and drama and the awful sadness that come from the day-to-day work in their profession. And I should add that nurses usually don’t share their stories with the outside world because they want to spare friends and family the sadness and shock they are forced to endure as parts of their jobs. More than anything, they want to leave the pressure and the scars of their profession behind them when they leave work at the end of a shift.
As I have said, nurses have been anonymous to many people—and for understandable reasons. But in this collection of essays, they are sharing their secret up-and-down lives with the world. Each essay tells a different story, but all of the essays have a common theme: No matter how difficult nurses’ lives or how secret their suffering, becoming a nurse entails movement into another dimension of strength and character and persistence; it is a path of irreplaceable and often unacknowledged service to society and humanity.
All nurses will understand the message inherent in the title of this book. It is the theme of survival, the theme of maturity, the theme of selflessly treating and healing all patients in any way possible, whether the credit that is due is forthcoming or not. No matter what your age, race, or sexual orientation is, you become a different, stronger, and more capable and well-adjusted person than you ever imagined possible, once you become a nurse. You have reached a plateau of service and empathy heretofore unimaginable. As Tilda Shalof expresses in her essay, “I See You,” all nurses say with confidence and know for certain that this phrase and title are true: “I wasn’t strong like this when I started out.”
80 pages of magic.
The Resurrection of Wonder Woman
Pink from her bath and aglow with excitement, three-year-old Maya perched on the edge of the bathtub. I stretched out my arms and she jumped, landing in the white terrycloth towel I held out. I set her down on the bath mat and dried beads of water from her skin, wrapping her in the towel. Then I draped a dry towel over my own shoulders and led her into our game.
In our shared imagining, the towels became two white capes. We ran from one end of our apartment to the other as our capes billowed behind us.
Together we called, “Wonder Woman! Wonder Woman!”
Exulting in our superpowers, we extended our arms like wings, grasping the edges of our capes, two beings as one in flight. We imagined we wore magic bracelets on our wrists and golden lariats around our waists, just like our heroine. The fantasy of being all-powerful ended at the side of Maya’s bed, where I helped her into her nightgown and tucked her in, a little girl again.
It was the 1970s, and I made a point of reading bedtime stories about exceptional women to her so that Maya would dream of daring and of genius. I hoped one day my daughter would become a woman who embraced her own power.
Sixteen years later, after a daredevil stunt left Maya in a coma, I wished I’d told her more cautionary tales.
I stared out the window in the neuroscience ICU waiting room. Below me, stick figures moved across achingly green lawns. They looked like a cardboard tableau of normal life. Mount Diablo’s sawtooth outline cut through a ribbon of clouds. A grandfather of a mountain, its hulking presence loomed above the rolling hills and valleys of Contra Costa County, a collection of suburban towns east of San Francisco. Maya’s accident had happened three days earlier on a hot April afternoon in the foothills of Mount Diablo.
She had hiked to a meadow laced with oat grass and wildflowers. A ravine full of scrub oak and laurel trees tumbled down to a dry creek bed. One of her friends dared her to ride bareback on a horse they found there unfenced and unsecured. The animal reared and threw Maya to the ground with such force that she never regained consciousness.
The owner of the horse had sent her minister to the hospital to comfort me. A middle-aged woman with salt-and-pepper hair and a smile that was somehow too sympathetic, she had watery eyes that peered into mine. She had patted my shoulder and assured me her congregation was praying for us.
Now, I looked at my watch, steeling myself to face the double doors that led into the intensive care unit and another ten minutes with my comatose child. I lifted the house phone.
“This is Maya’s mom. Can I see her now?”
“Yes,” a voice answered. “I’ll buzz you in.”
I walked toward my daughter’s bed, past the curtains surrounding families bent over other silent forms. The walls of the John Muir Medical Center were arctic white. Gleaming fluorescent lights stung my eyes. Antiseptic pricked my nostrils. After seventy-two hours of nursing my hope, willing my daughter to recover, an impossible thought dawned—Maya might not make it. When I reached her bedside, I trembled with this new possibility. I took her hand in mine.
“Sweetheart, it’s Mom. I’ve been telling you that you will get well. But maybe that’s not right; maybe what I want isn’t what matters.”
A roar filled my brain. I shook my head, trying to silence my own resistance. I spoke to my nineteen-year-old daughter, saying out loud what I would never accept in my heart. “You decide, honey. I won’t hold you back.”
As I stood looking down at the beautiful young woman she had become, I knew I had no magic bracelet, no supernatural powers. Neither did she. Maya’s face, inanimate as ice, was rosy-cheeked, bridelike against the stark white sheets.
I leaned into her and whispered the biggest lie of my life, never doubting she could hear me. “I’ll be all right, sweetheart, if you need to go.”
As my determination dissolved, I wanted to throw myself across her chest and give in to hours of unsuppressed weeping. But then I had a new thought: If I break down, it will be too hard for her to die. My task now is to let her go.
I remembered the night two years earlier when Maya had graduated from high school and I returned home alone to prepare for the party. We lived in a modest rented house in Walnut Creek, a middle-class enclave. The olive tree in our front yard dropped silver-gray leaves and shriveled fruit on the front walk. I grabbed a broom and swept the walkway in my suit and high heels. When I went in the house, I glanced at my daughter’s senior picture sitting on the mantel, her white-blond hair and the mischief in her brown eyes. I burst into tears, anticipating, for the first time, how empty my life would feel when she left for college in a few months. On that night when I acknowledged that my daughter was moving away from me, I never dreamed that anything more difficult could happen, that any greater surrender might be asked of me.
Maya’s chest rose and fell. The ventilator hissed, the monitors beeped, a fiber optic cable snaked into her skull to measure the pressure inside her brain. Over the last three days I had become expert at reading the peaks and valleys on the monitors.
I whispered in her ear, “It’s between you and God now, Maya.”
I never knew love could be so big, that it could expand enough to allow even this. God must be mad! I must be mad to say, “Yes, go.”
A few hours later, her temperature soared. The doctor paced at the foot of her bed, thumbing her chart.
“Okay, what next?” I asked, afraid of his answer.
“Routine blood tests to see what kind of bug might be causing this. We have to bring the fever down, or she could go into convulsions.”
“Should I spend the night?”
“No, you go home and try to rest. I’ll call you if there’s any change.”
The next afternoon, Maya’s brain surgeon, Dr. Carr, asked to speak with us about the results of the cerebral blood flow study he had ordered. One of the nurses gathered us into a windowless conference room where a hospital social worker sat at the opposite end of the conference table, looking grave and sympathetic. Boxes of tissue sprouted from the side tables. Almost a hundred hours had passed since the accident.
Dr. Carr came in, his white coat flapping, and sat down at the head of the table. I sat on his left side, staring at him.
“Did you feel it?” he asked as if he were conducting a pop quiz and we should all know the answer. “Did you feel it coming?” He leaned forward in his chair and said, “Bad news. Bad news.”
Why does he say everything twice? I clenched my ice-cold hands in my lap and searched his handsome, dispassionate face with a surge of amazed fury.
“The test we did shows how much blood is flowing to the brain.” He spoke to the wall now. “There is none, absolutely none, zero blood flow. I’ve declared her brain dead.”
I could not move or even blink. A collective gasp filled the cramped room. Maya’s boyfriend, Dale, groaned. My ex-husband, Dan, put his head in his hands.
“I’ve called in a second surgeon to confirm the diagnosis of death by neurological criteria,” Dr. Carr said. He spoke with exaggerated calm, seemingly oblivious to the emotions swirling around him.
My eleven-year-old daughter, Meghan, leaned against her father and wept. Dale’s mother began screaming “NO!” over and over.
I stared at the doctor with absolute hatred. How could he tell such a lie? How could he sit there, so smug, so above it all, so white and clean and antiseptic? Hot tears of disbelief trickled down my cheeks. Of all the people in the room, I was the only one who did not move or cry out. I felt granite-hard, yet sensitive as a tuning fork, paralyzed with grief. The social worker passed out tissues like party favors.
“We did all we could,” Dr. Carr said.
I nodded. This was the one thing I did believe.
For the first time since he had entered the room, Dr. Carr met my gaze. His eyes were like icy blue marbles. “Would you consider organ donation?”
The question hung in the air for a long moment. In that instant I saw my baby the day she was born, pink and bald, her eyes squinting up at me as if the light might blind her. I saw my diabetic mother plucking at the sheets on her deathbed as her kidneys failed. Then the image of the pink donor sticker pasted on the front of my driver’s license. I pictured families in other hospital conference rooms waiting for bad news.
“Yes,” I heard myself say.
Dr. Carr nodded. “At least it won’t be a total waste,” he said. I recoiled.
He waved his hand in the direction of the ICU and all the high-tech gadgetry keeping Maya’s heart beating, her lungs pumping, her blood circulating. I could see he meant that all the effort and resources spent on a hopeless case would not be in vain. But my yes was designed to signify something very different. It meant that the love and energy I had poured into my daughter, her very life, must continue. I could no more accept that Maya was truly dead than I could fly to the moon or allow any vital part of her that could save another human being to go to her grave.
Dr. Carr said he would contact the California Transplant Donor Network. Every second counted now, because as long as Maya was supported by the ventilator, the risk of damage to her organs, especially her lungs, increased. People were waiting with desperate patience for what Maya had to offer.
I had made my decision. I had said yes. Now, I trembled uncontrollably. I was about to give my daughter away in pieces. If I had fought harder, could I have held her here? I gave Maya ultimate freedom, and she took it.
Across the San Francisco Bay, I later learned, a figure shrouded in white lay on a hospital bed, near death. The man’s heart failure was so profound that his fingernails had turned blue. This man, comatose and oxygen-starved, was a blip on the computer screen of the national donor registry. Along with four thousand others on the heart transplant list, he was waiting for someone to die so that he could live.
By his side at the University of California Medical Center in San Francisco on the afternoon of April 6, 1992, his wife stood looking down at the comatose figure of her husband; she knew that even the ventilator could not force air into his lungs much longer. She watched the rise and fall of her husband’s chest, the backs of her hands wet with tears she rubbed away without noticing.
Dozens of times in the last ten years she had stood over his crumpled body after the defibrillator implanted in his abdomen knocked him to his knees with a shock powerful enough to restart his failing heart. Her two young children were reading magazines in the waiting room, fidgeting with their candy wrappers—their lives a constant limbo. She turned her back on her husband’s bed and prayed for a miracle. She didn’t know it, but her prayer had just been answered in another hospital only thirty miles away on the other side of the San Francisco Bay.
Our donor coordinator was a young nurse, not many years older than Maya. She sat across from me at a polished wooden table in a windowless conference room. She read me a list of Maya’s vital organs as if they were car parts, asking permission to salvage each one.
“Do you give consent for her corneas?”
“Yes,” I answered and then initialed a blank line next to the name of the organ with the pen she had handed me earlier.
The nurse’s cheery smile did not mask her discomfort. “Do you give consent for her lungs?” I knew she was only doing her job, but surely she must realize that to a mother this was torture.
By the time she got to the right and left ventricles of Maya’s heart, I was ready to reach across the table and slap her.
“Look, I can save us both a lot of agony.” I focused my eyes like laser beams. “Just take it—take it all.”
She shook her head apprehensively. “The law requires that I must go through each one . . . I know this must be hard for you . . .”
“It is unbearable,” I snapped, balling my hands into fists beneath the table. “Do you have any children?”
She shook her head no.
I smiled sardonically. “I am going to initial each of these blanks and sign this form here at the bottom,” I said slowly. “Then we are both going to agree that we did this legally. But I am not going to sit here while you read me a list of my daughter’s organs.”
I pressed through the triplicate form with the ballpoint pen.
“You understand that you are giving consent for them to take bone, skin tissue for grafts, and inner ear bones as well,” she said. Her voice quavered.
“Yes,” I replied. “You have my permission to take anything that will save lives or reduce pain. Just don’t make me stay here another minute.”
As a “biomort,” or a “beating heart cadaver,” Maya was suspended in a nether world between life and death. Her brain would never function again, but with life support, her heart continued to beat and her chest rose and fell, filled with mechanically produced oxygen. When Dr. Carr asked if I would donate Maya’s organs, I gave my consent in a state of raw emotion with little knowledge of the ethical fog zone I had just entered. Within minutes, “life support” became “organ support.” A few hours later, surgeons began to “harvest” my daughter’s organs and tissues, work that continued through the night.
Thank God no one asked me to make the decision to unplug her. I would have left her there, suspended, her brain growing ever more gangrenous, simply to have the illusion of life, to stand next to her bed watching her pink cheeks and her closed eyes, the rhythm of her rising and falling chest, to be able to whisper words of love in my daughter’s ear. But tens of thousands of dollars were being spent for her care, and the doctors knew there was no hope she could recover.
In the years since Maya died, I have been to countless donor events where donor families are lionized as heroes. Perhaps we are. But I wonder. Do we really understand the implications of what we have agreed to in a moment of crisis?
Agreeing to donate Maya’s organs and tissues without knowing for certain what she would have wanted put me on morally shaky ground. At least the doctors had radioactive dye studies, concrete evidence that her brain would never function again. All I had was an overwhelming desire not to let my daughter die entirely. Donating her organs seemed like the only way to salvage her lost life. My consent was an act of hope, of defiance, a way of keeping my child alive.
Since her death on the afternoon of April 6, 1992, I have lived with the unspoken fear that I abandoned my child to organ retrieval surgery when she was still breathing and her heart was still beating. Rationally, I know that her breath and heartbeat were mechanically induced, but she still looked alive, requiring me to suspend the evidence of life before my own eyes and trust that brain death was also real death.
I am not alone in my doubts. Brain death, or death “by neurological criteria,” was only recognized in the 1960s, after medical technology had advanced enough to keep people on life support. To this day, according to researchers, a majority of people surveyed do not understand the concept of brain death. Many mistakenly believe that someone who has been declared brain dead can recover.
Interviews conducted by bioethics researcher Vera Kalitzkus with donor families in Germany show how difficult it is for families, parents in particular, to wrestle with the dichotomy of the “living corpse.” Kalitzkus interviewed one mother whose two-year-old child was declared brain dead following a car accident. “If the respirator had been turned off, then he really would have died. But the last image I have of my child is that of a breathing child. And that makes it very hard to cope with and go on living,” the bereaved mother said.
Now that there are so many shades of gray in what used to be black and white— fifty years ago a person was either dead or not— Kalitzkus argues that we need to acknowledge stages of death. The families of organ donors confront three distinct phases, she writes: brain death, when the loved one is in an indeterminate state but is in the process of dying; actual death, which takes place after the organ removal; and final death, when the transplanted organ dies in or with the body of the organ recipient. She acknowledges this places an additional unbearable burden on donor families: “Organ donation also means to sacrifice the hour of parting, the last moments they share with their dying/dead relative, and surrender this intimate and private moment of life to the necessities and the regime of the transplantation process,” she writes.
If I had been one of her subjects, I could have told Ms. Kalitzkus about my surreal parting from Maya and how for years I used to fall to my knees crushed by remorse and beg her forgiveness for what I had allowed doctors to do to her body. But at the time I gave consent, I didn’t know exactly what would happen to Maya. All I knew was that her organs could save other lives. Altruism seemed preferable to despair.
At 3:30 that April afternoon, after I had signed the consent papers and pressed them into the donor coordinator’s shaking hands, I led the way to my daughter’s bedside for the moment of final good-bye. My minister, Rev. Margaret Stortz, stood at Maya’s shoulder on one side of the bed; I stood on the other side, facing her, with other loved ones gathered near the foot of the bed. A nurse drew the curtains, and we formed a protective circle around Maya’s body.
The ventilator still distended her mouth, but the fiber optic cable that had run from the computer into her bandaged skull was gone. Her cheeks were rosy, and some of the puffiness had left her face. She looked so much like the brand new baby I had held in my arms almost twenty years ago; she had the same swaddled look, the same clean smell. I lifted her warm, limp hand and held it in mine.
The October morning Maya was born they wrapped her in a blanket and gave her to me on the delivery table. I first noticed her fingers—long, thin, strong, with perfect miniature fingernails. I extended my index finger, and she latched on tight with her fist.
“Look, she has piano player fingers. Those hands could straddle an octave,” I said to her father, delirious with fatigue and happiness.
At her bedside, it was as if no time had passed since that day in 1972. I slid my right hand under her shoulder and gazed down at her serene young face, playing with her warm fingers, now utterly still.
Rev. Margaret leaned over her. “Maya, this is your graduation from life on earth. We release you with all our love and blessings.” She looked at me from across the white mound of sheets covering Maya’s body. “Can you let her go, Eleanor?”
The question took my breath away. My chest tightened as if something was squeezing the air from my lungs. I looked down at the pink cheeks, the smooth neck, the slim body. My lovely, lovely girl.
“I love you, Maya,” I whispered. “You are as beautiful to me as the day you were born. I’m letting you go now with all my heart, with all my love.”
I stroked her cheek again and again.
Margaret’s voice startled me. “Eleanor, would you like a few moments alone with her?”
“No.” I shook my head mechanically. Tears slid down my cheeks. I was afraid to be left alone with my daughter’s body, for fear I would go mad.
I put my head on Maya’s chest, resting my cheek against the soft cotton of her gown. The rise and fall of her mechanically powered breath was like a whoosh of ocean tide—in and out, in and out. The steady drumming of her heart filled my senses. At last, I raised my head. There would be no last breath to signal the end. I simply had to walk away and leave her, something I did not have the strength to do on my own.
I looked at the other faces ringing the bed. Without speaking, as if we had planned it beforehand, we each bowed our heads toward Maya’s body. Then we walked away from her without speaking, past the nursing station, returning to the waiting room with its hard plastic chairs and TV bolted to the wall. I stared at the blank screen, gathered a stray balloon and a get-well collage made by Maya’s girlfriends, and walked away. I could not contemplate what would come next.
I allowed doctors to take a hacksaw to my daughter’s chest. They broke open her rib cage to extract her heart, her liver, and her kidneys.
Several days after the surgery I received a bill from the Red Cross for donated blood Maya had been given during the organ retrieval surgery. I called our donor coordinator for an explanation.
“If my daughter was dead, why did she need a transfusion?” I demanded.
She did her best to calm me. “To keep her organs functioning they have to be perfused with fresh blood,” she explained, apologizing for the misrouted bill. It should have gone to the California Transplant Donor Network. Later, I learned that Maya had been anesthetized and given muscle relaxant during the surgery to recover her organs. This is done to lessen the chance that the body on the table will move involuntarily. It made me wonder if the operating room staff also questions whether beating heart cadavers are truly dead.
Twelve days after Maya died, I received a letter from our transplant coordinator, the young nurse I had treated so curtly. She told of the miracles that resulted from my decision. Maya’s kidneys had been flown across the country to the Boston area, where two patients, one twenty-one and the other forty-seven, had been successfully transplanted. Her liver had gone to a thirty-eight-year-old woman with a rare form of liver disease. She was the mother of a seven-year-old daughter and would have died without the transplant. Maya’s corneas had restored sight for two people in the Bay Area. Her skin tissue, tendons, ligaments, cartilage, and inner ear bones would help more than fifty others.
I burst into tears when I reached the paragraph about Maya’s heart. It had been given to a fifty-four-year-old Chilean businessman, an import-export specialist who did business in the United States. “He had been waiting for some time for this gift,” the letter said. “He is recovering very well after surgery. Without this transplant he could not have survived.”
Tucked between the folds of the letter I found a note from his wife. She had not signed her name, but I could hear her voice through her words. “My two children and I want to express how thankful we are to you for the gift of life you as a family have given us as a family. My husband is getting better every day and the children, eight and twelve years old, have another chance to grow up with a father. This was only possible thanks to the decision you made to become part of the donor program. From our hearts—thank you. We will pray for you and your daughter every day.” She signed it, “The Receiving Family.”
Eighty-six words. During the months that followed I would often pull out that ivory card with its neat, spiky letters and reread it, as if I could balance my grief against another family’s joy, as if it were ballast enough.
More than 105,000 people await transplants in the United States today. Each day, on average, eighteen of them die waiting. Some of them are young children. When I think of their parents, I forget my doubts. Yes, my daughter died a more violent death because of my decision. I can look that in the face now, knowing it was the price of altruism. It would have been worth it to save only one life, but Maya’s organs and tissues saved or transformed many more.
Indeed, a study conducted in the late 1980s, as transplantation became the treatment of choice for many life-threatening conditions, found that among the general public, saving lives was regarded as the primary motivation for organ donation.
And yet altruism, alone, is not reason enough—at least for me. I chose donation as a way to create meaning from the seemingly senseless death of my child. I also saw it as a way to keep my daughter alive—a fixation, I have since learned, that, in some form, is common among donor families.
The study compared the attitudes of the general public with the attitudes of families of organ donors. When researchers asked what the most important motivations for donation might be, 86 percent of donor families surveyed answered that they wanted something positive to come from their loss.
The researchers, Helen Levine Batten and Jeffery M. Prottas, concluded, “Altruism is the core of the shared motivation of both actual donor families and those among the general public who would agree to donate. What separates the attitudes of these two groups is the far greater concern of donor families for the meaning of donation for their memory of the deceased.”
Almost 90 percent of the donor families surveyed by Batten and Prottas said that if they had to make the decision to donate again, they would say yes.
Bioethicists continue to debate the boundary between life and death. Medical anthropologist Margaret Lock argues that death is a social construct, shaped by the values of the culture in which it occurs. She offers Japan as an example. There, only people who have specified in writing that they wish to become donors can be declared brain dead and thus able to donate. “Brain-dead individuals who have not indicated that they want to become donors are not considered legally dead,” Lock writes.
Had she died in Japan, Maya could not have become an organ donor. She would have experienced both brain death and actual death, and the four people who received her organs would have waited longer for life-saving transplants or perished before organs became available.
Which is the higher ethical good? Ensuring that my daughter was well and truly dead? Or living with the ambiguity and moral anguish of not knowing but giving people in need a second chance at life?
Only 10 percent of donor families ever meet the recipients of their gift. In 1994, two years after Maya’s death, I met the man who had received her heart, along with his wife and their two children. We met on a late afternoon in May in the San Francisco offices of the California Transplant Donor Network. By pure coincidence, we had each requested the meeting within days of one another, so the transplant organization granted our wish. As I embraced Fernando and listened to Maya’s heart beating in his chest, I had the oddest sensation that she was there, still vital, still alive.
Fernando called Maya “mi alma,” my soul. Each time he felt her heart beat in his body, he sensed her soul was one with his. This mystified and disturbed him, yet he formed a close bond with Maya and wanted to know everything about her. When he asked for her picture, I gave him copies of several of my favorite photographs.
In 1996 my younger daughter, Meghan, then sixteen, flew to Santiago as a guest of Fernando and his family. She befriended his son, by then a seventeen-year-old with a drinking problem. He had grown up certain his father would die. I wondered if some part of him could not accept the gift of a dead girl’s heart that kept his father alive and his family intact. I later learned that often recipients do not seek contact with the families of their donors because their feelings of guilt—and gratitude—are overwhelming. In our case, Fernando and I both wanted to know more about each other. Neither of us realized how this would affect our children.
Meghan’s visit lasted for two weeks. At one point, Fernando asked her to go into his office to retrieve something for him. As she turned to leave the room, she glimpsed a poster-sized picture of Maya displayed on the wall above Fernando’s desk. Her sister stared down at her, so lifelike that Meghan gasped. Maya was enshrined in Fernando’s heart and his life, so perhaps it is not surprising that he memorialized her this way. It was one more marker of how, in some way, donation had made us kin.
Perhaps Maya was Wonder Woman, after all. She lived long enough to express her daring and genius more than most mortals. Maya was a gifted young actress. The day before her accident, she had learned about her acceptance as a community college transfer student into the UCLA School of Theater, Film, and Television, an honor granted very few. She was offered a full scholarship. She had been out celebrating, riding a strange horse bareback in a remote field.
She flew to the ground with her dreams and her beauty intact and lost consciousness instantly. The last time I spoke with her, as a conscious being, was the morning of the accident. I ruffled her hair on my way out the door.
“I’m so proud of you, honey,” I said, my heart practically bursting.
She grinned up at me from the armchair where she was perched, still in pajamas, and gave me a Top Gun–style thumbs up.
“Love you, Mom,” she said.
“Love you too,” I replied, already out the door, already savoring our future.
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